Tuesday, May 9, 2017

MEme is attending the Millions Missing Protest in Dublin

In 1998 I got suddenly very ill with suspected meningitis. This was luckily not the correct diagnosis. However, this sudden onset of extreme fatigue, terribly headaches, the inability to coordinate my movements, to sit up for any length of time, or to have a conversation was the start of a now 18 year long journey with M.E. (Myalgic Encephalomyelitis).

My life changed within weeks from being a self-employed artist to needing care with even the most mundane of actions, like opening a tube of toothpaste. The ability to create detailed sculptures vanished. My love of reading became a task no longer available to me.

The first few years I was more or less housebound. After begging with the HSE, I was given home-help every day of the week, twice a day. At first I was told this was not available to me, as I was only 36 years old. You needed to be over 65... But I got it. Maybe as I otherwise needed to be taken into full time care? In today’s world getting home help for so many hours seems like an absolute miracle.

Times have changed.

What has not changed that in all these years there is still not an absolute diagnosis of M.E. given by any doctor in Ireland. The term Chronic Fatigue Syndrome is more often used, but is in no way correct.There is no consultant in Irish hospitals who deals specifically with M.E.

It is not unlikely to end up in hospital and meeting a doctor who would ask: “M.E., What is that?”

Often M.E. is written about in the media with a notion that “It is all in your head”. A purely psychological illness. Trust me, it is not. I wish. I wish I could get my body to function properly again through talk-therapy, or through anti-depressants. I wish.

Throughout the years I have found ways to make my life the best it can be, within all the limitations I still experience. Mainly through creativity, pacing and silence. This is not a cure, by any means, but a positive halfway point. A place in which I can escape the reality of illness.

There is no proper interest from the HSE to deal with estimated 14,000 people living with M.E. in today’s Ireland. To bring this injustice to the attention of politicians and the HSE, a group of inspiring (mostly) women have come together to see if this can be changed.

On Thursday 11th May there will be a demonstration at the gates of Leinster House, between 11am and 3 pm, under the Millions Missing Banner. We have asked politicians to come and talk to us. To our representatives.

All the millions of people living with M.E. world-wide who are missing from schools, work places, family events… from life as we know it.

I won’t be able to travel there myself. But MEme (a little stuffed penguin: M.E. me) who is my alter-ego, and has traveled for many, many years to places and people I could not get to, will be taken my place.

And hopefully will help in our bid to change the lives for the better of all of us living with this most challenging of illnesses.

MEme will be there with some of the people who live with M.E. and their carers, and among 250 pairs of shoes of those who can not attend. Accompanied by a few words on where they are missing from.

We would like to ask you for your support. Many of us will not be able to travel to Dublin and will be protesting from our beds, couches and homes through social media. Please be at Leinster House instead of us?